Monthly Archives: November 2015

This was the title of a great Conference at the London Metropolitan Archives on Friday 27th November. LMA have done a lot of work on disability history including running FREE Conferences, of which this was one. It’s a welcoming atmosphere, inclusive of students and experienced academics alike. They deserve to be congratulated.

Speakers’ interpretation of Technology was pretty broad. It encompassed the 20 year old Campaign for the Disability Discrimination Act, highlighted by Tom Hayes from SCOPE, and the portrayal of disabled people in eighteenth century England (Simon Jarratt), as well as what I usually think of as technology, namely gadgets and apps, (Peter Fuzesi), representation of disabled people in cinema (Richard Reiser) and in photography (Ian Jones-Healey).

In this blog I want to highlight two issues which stand out for me on reflection. The first is the question of what makes for effective campaigning. Tom Hayes posed this question, intimating that the old fashioned graft of filling envelopes and chaining oneself to railings in the company of others was more effective in creating campaigning communities than the modern practices of tweeting, blogging, and Facebooking. It is a question I’d been pondering as I struggled to write an academic paper on the Changing Face of Parent Advocacy, comparing the local Societies which characterised the grassroots of Mencap’s predecessor organisation, the National Association of Parents of Backward Children, with the blogs and pretty continuous tweeting of the campaign for justice for Connor Sparrowhawk for example. I have some sympathy for the view that the old methods might reach more deeply into the communities they need to reach than social media which, particularly for older generations, is an alien world. Only time will tell.

The other issue is the question Sue Ledger, Vicky Ackroyd and I posed in our paper ‘How come we didn’t know this happened?’. Why does it matter that people with learning disabilities, their families, and their allies, know about the history of learning disabilities? We were recounting the work we are doing with Access All Areas to help their actors understand the history of institutions, so that they can in turn share this with other people in London through drama. It was one of these young actors whose quote ‘How come we didn’t know this happened?’ gave us our title.

Do people with learning disabilities now need to know about the old mental handicap institutions?

Even though I have made my name and even a modest living through researching and publishing about this history, it is still a question that troubles me. I have lived through an era when delabelling was all the rage, labels were blamed for many of the ills experienced by people with learning disabilities. But studying this history implies identifying with the label, and being interested in what happened to people with similar labels in the past. This sits uneasily with policies of inclusion and integration, which say we are not defined by our label. Other groups – LGBT, for example, or women – have fiercely argued to record and own their own history. People with learning disabilites have not made these arguments. I’m still not sure whether they should be encouraged to do so.

Last night I attended Mencap’s second annual lecture in the name of Lord Rix. It was a thought provoking occasion, about the representation of people with learning disabilities in the media. Two speakers, John Harris, Guardian journalist, whose 9 year old son has autism, and Sarah Gordy, one of very few actors with Downs Syndrome to make it onto mainstream TV.

A few things have stayed with me. One is the statistic that almost a third of adult social care spend is on people with learning disabilities, but they rarely feature in discussions about social care, which mostly assume it is all about older people. How can we change that? We need to because, even though the Spending Review has released Councils to raise more money through Council Tax, there is no guarantee that they will use it for adult social care, and anyway it is not going to be enough.

Another is John Harris’s view that learning disabilities is the final frontier when it comes to civil rights. No longer is it acceptable to ‘Black Up’ like the Black and White Minstrels. But it is Ok to have non disabled actors playing disabled people (Eddie Redmayne playing Stephen Hawking) or autism (Dustin Hoffman in Rain Man) or learning disabilities. I was not quite sure what I think about this. If these films had had little known actors, albeit disabled, would they have had the same huge audiences. I very much doubt it. Is the end justified by the means?

I also pondered that issues relating to people with learning disabilities are not necessarily the same as for other groups who have beem misrepresented. Some people, however benign the media, however advanced the technology, will not be able to represent themselves. Other people will always need to speak for them. So we may be just arguing for re-drawing a new frontier, including those who can self advocate in media representations, in blogging and tweeting, but still leaving others unheard and unheeded.

Good to be pushed to think about these things anew. The biggest question for me is, how do we get issues relating to learning disabilities discussed in a well informed way in the mainstream media. If we are ever going to change the world so that everyone is included, that has got to happen.

A rather wonderful nurse I know who has been working with people with learning disabilities since she qualified in 1972 said something that really made me think

I saw more improvement in the first 20 years of my career than in the second.

Her view chimed with some ideas I had had which found their way into a book I published with Kelley Johnson in 2010, Towards a Good Life for People with Intellectual Disabilities. We wrote this because we felt that the great optimism about the potential for people with learning disabilities to take their place as fellow citizens, characteristic of the late twentieth century and culminating in Valuing People had stalled.

We had both been puzzling as to why aspirations had not moved beyond an ‘ordinary life’ of visiting coffee shops and garden centres, swimming pools and bowling alleys, images of smiling people in sparkling kitchens, devoid of life.

Now, with retreat from the welfare state in full spate, we might be excused for nostalgia for those days. However, I make no apology for once more raising the question of why securing the citizenship of people with learning disabilities is so elusive. It is as if we have tried everything, institutions, community care, segregated services, inclusion, but none of them has proveD to be the magic bullet. Once there was a nice clear enemy, that was called institutional care. We believed, we really did believe, that if we got rid of those life would be better. Well, it probably was a bit better for most people, a lot better for some, and for some it was not better at all. I recall meeting 5 wonderful women on a visit to Ireland where they still have institutions. They had been resettled into the small town adjacent to the institution, Moore Abbey. After a year they had aksd to go back. wHy? I asked. The answer. They could not go out without staff, and even when they did go out there was nowhere much to go. Whereas inside Moore Abbey they could wander at will, visit friends, do hobbies, and generally lead a life that for them was a better life than ‘supported living’ on the outside.

This is not to say we should go back to institutions, far from it. But it is to say that we have been fighting the wrong enemy. It was not institutions, that were the problem, it was the underlying premise that people wth learning disabilities are somehow other and need special facilities. The replacements for institutions, Adult TrainingCentres, hostels and respite care equally represented special treatment for people whose lives were going nowhere. Then those facilities gave way to supported living, independent living, resource centres, individual budgets, and inclusion. And now? Cuts and delabelling for people who are classed as mild or moderate, with special facilities only for the people with more profound impairments – and the very real threat of incarceration for those who appear to present a threat to society. We are drifting back to a situation of neglect for many people, leaving families to cope until they give up.

So what is the answer – if there is any answer. I do believe that part of the problem is in the binary disabled / non disabled. It doesn’t make sense to divide the world in this way. Lots is invested in it, on both sides. Professionals who specialise in treating people who are so labelled, disabled activists who have done so much to challenge and change perceptions of disability, assessors from ATOS who are paid to draw an impossible line. The way things are going – see Chris Hatton’s blog – theGovernment are doing some of this work for us, excluding people from the disabled label because is carries certain privileges, which simple poverty does not. But that simply redraws the line.

Perhaps the battle needs to shift to the battle against inequality, the growing divide between haves and have nots which blights our society. To all according to their needs is an attractive proposition, and one which commands widespread support when it comes to the NHS. Those needs could be for 24 hour skilled support, maybe in a community like Camphill; they could be for company or someone to help with shopping. Or they could be for the certainty that although we don’t need it now, that support will be there for us, no strings attached, when we need it. The way the NHS works, indeed.

Maybe the battle needs to shift from securing a good life which for many equates to having a nice house, car, holidays, food, fun, to securing good lives for people, whoever they are, and which they define for themselves. Idealistic? Maybe. But so was the welfare state in which I grew up. It needs reinvention, not abandonment.

Today was the launch of the film of Mabel Cooper’s life, ‘No Longer Shut Up’. The event was hosted by Access All Areas who produced the film. It was held in the Barbican, London. And what a wonderful upbeat event it was.

Mabel Cooper receives her Open University Honorary Degree from Dorothy Atkinson at The Barbican, 2010

For those of you who don’t know, Mabel was a fantastic woman who had been in St Lawrence’s Hospital, Caterham, for 20 years. And there she was shut up, and in response she shut up, refusing to say more than yes or no. Eventually she got out, and then her life really did begin. She was determined that institutions should be shut, that no one should have to go through what she went through. She did not know why she had been put in St Lawrence’s, and only pieced together her life story with help from OU academic (and Mabel’s Friend) Dorothy Atkinson, by tracking down her case notes. She discovered it was because her mother had been begging and unable to care for her. Her mother was put in one institution, she in another. They never met again.

Through telling her story, Mabel became a celebrity, was invited to speak across the world, and highly influential, perhaps one of the most successful self advocates this country has produced. The film will tell you all about it, and once it is on Youtube, I’ll tweet the link

It was so fitting that the launch was at the Barbican because that was where, in 2010, Mabel was awarded an Honorary Degree by the Open University for her services to the community, and for the unique contribution she made to the OU’s Social History of Learning Disability Group. No one ever left one of our events without Mabel gently suggesting they should buy one of the books in which her life story featured. They usually agreed!

Mabel believed that the secret was to change attitudes to people with learning difficulties, and that you should begin with young people. She would go into schools to tell her story. She was a brilliant speaker and got a warm response. No Longer Shut Up was produced so that Mabel’s work with schools could continue, her legacy if you like. It’s a legacy Access All Areas is pursuing with great energy, with ambitious plans to train young people with learning difficulties to tell communities across London about the history of institutions.

The fact that Mabel’s launch was in the same week as the All Party Parliamentary Group on Learning Disability discussed Transforming Care, the challenge of bringing the 3000 or so people in institutions back to their communities, reminds us that her work is not finished. And maybe she is right, we really must start telling young people about this Hidden History, those Forgotten Lives, and reassert her determination, to be No Longer Shut Up.

Transforming Care is the title NHS England has given to its plans to bring people out of distant Assessment and Treatment and Inpatient Units to be supported nearer home. Mencap produced an excellent Briefing Paper to support this meeting of the APPG, presided over by Chris Heaton-Harris MP – the new chair of the APPG, and addressed by the Care Minister Alastair Burt, Chief Nurse Jane Cummings, Viv Cooper of the Challenging Behaviour Foundation and David Jack whose son spent 6 years in an inpatient unit.

The briefing paper indicates why I might have attended this with a sense of déjà vu. I have followed with a sense of despair the battle being fought by Connor Sparrowhawk’s family for justice for their son, and the obstacles placed in their way. I listened to heart rending stories from families at an APPG last year at which Simon Stevens seemed powerless to implement the Winterbourne View Concordat. Now there is renewed energy and even some political muscle being brought to bear with Building the Right Support published in October 2015 re-committing to closure of in-patient beds.

What is different this time was a theme of the questions. Very fair. We have heard all this before. There is a difference this time. £30 million has been committed by Government to support Local Authorities with transitional costs associated with building community supports while still paying for in-patient beds. There is more money for capital funding, and some ‘dowries’ for people who have been incarcerated for more than 5 years. That helps, for sure. I have argued elsewhere that DHSS money was the crucial factor which enabled hospital closure in the 1980s.

But … why do I remain less than convinced that all this high level attention won’t necessarily change things. The commitment appears to be in place, and to be genuine, but methinks the gap between rhetoric and reality has never been greater. So what is needed on the ground? Some findings from SHLD research came to mind.

Sue Ledger’s PhD ‘Staying Local’ examined what enabled people to remain in their own locality, an inner London Borough. What did she find? That family carers were successful when they had ‘social capital’, from other family members, local staff, faith groups, neighbours and friends. That such networks were fostered through Borough based segregated services, like hostels, Day Centres and local Mencap groups or Gateway Clubs. At times of crisis, responsive and flexible support was crucial. Local staff who knew the families in their patch were able to avert out of area placements at times of crisis by taking responsibility for sorting something out. It might be finding a respite bed when a key family carer was unwell. It might be putting in place interim arrangements while longer term solutions could be set up. It might be creating ways to support people which were at variance with ‘official’ service remits. Shared care arrangements between families and services. Help getting to medical appointments. Assistance in getting tenancies transferred when the carer died. In all cases this required trusted relationships between families and staff. It required staff who knew people as people, knew their histories, who and what mattered to them. People willing to break a few rules. And people who had a commitment to keep them local.

Just imagine if this had been the response Connor Sparrowhawk’s family had got from Social Services when they asked for help back in 2013. He would not have needed to go into the Short Term Assessment and Treatment Unit. He almost certainly would not have died.

But it is hard to imagine in this world of transitory and distant care managers how such a response could be engineered now. There are no hostels which can provide a bed for a week while a carer needs to go into hospital. There are no local staff with a sufficiently broad remit to take that kind of responsibility. And I fear I was not convinced that the high level support, even the excellent and apparently committed leadership from Jane Cummings and her team, is enough to rebuild those supports where they really matter, with local families struggling to manage. I hope to be proved wrong.

This blog was inspired by an email I received from a woman who had been a supporter in a self advocacy group for many years, but is leaving because prospects are so bleak.

She asked if I knew of any self advocacy organisations which are actually on the up. And if so what is the secret?

It so happens that I do know of one organisation which is flourishing. 500 plus members, active local groups, money in the bank, dedicated and talented staff, and a queue of talented people wanting to be Trustees.

What is the secret?

Here are some thoughts.

Focus – a few long lived and active campaigns, led by self advocates, supported in the background by staff. These campaigns are all local. To date this organisation has not been tempted to stray beyond its home territory, has not been pulled into the National Forum or similar talking shops.

Leadership – the organisation has outstanding leadership, both from paid staff and from Trustees. It is telling that in an open election, 2 of the 3 officers were re-elected with significant majorities. And they deserved it.

Professionalism – self advocates prepare carefully for public appearances. They know their stuff. There is no real danger of them drying up and needing to be rescued by supporters, something I have observed all too often.

Real care is taken to ensure that the charity’s products – films, tweets, website – are of a high quality.

Partnerships with organisations with convergent aims. I have been particularly struck by the fact that they work readily with local parents’ organisations, when traditional self advocacy often positions families as the enemy, not a natural ally.

Taking hard decisions to ensure that the best person for any job is chosen.

A wide portfolio of funding sources, both statutory and charitable. During 2014/15 there were at least 50 different funders, some small, some pretty large.

There are some threats.

Opportunities to extend into service provision are appearing. The members are very keen, as there are openings to earn money. As a sympathetic observer I am slightly concerned that this could distort the organisation’s ambitions, and cloud the Trustees’s objectivity, given that saying no to such opportunities means saying no to income.

All Trustees have learning disabilities and are reelected annually. So far the elections have resulted in continuity, experienced people have been reelected. But it is possible to envisage a situation in which all the officers were overthrown and people without the experience or, necessarily, ability take over the running of a charity with 6 staff and an income in excess of £100k.

Very real challenges in preparing self advocates for the onerous and highly responsible job of being Trustees. This is not, of course, a challenge unique to people with learning disabilities. But achieving a good balance between executive and non executive power and influence is an ongoing and time consuming process.

I want to end this blog on a high note though because I am so relieved and delighted that at a time when self advocacy appears to be struggling, it can be made effective. And I observed a scene on my last visit which reminded me, once again, just why self advocacy matters so much.

Tracy has been elected as a Trustee for the first time. Other Trustees were persuading her to go to the night club run by the charity. She said

‘I would have to be home by 9 to take my tablets’

‘Why? Don’t your tablets move?’

‘Staff say so’

One young man took a deep breath.

‘I don’t know how to say this without sounding rude’ he said. Eventually he found a way.

‘You are in supported living aren’t you? Well that is not support, that is control.’

This is no doubt only the beginning for Tracy to learn about her rights, and how to assert them. But a salutary reminder of how easily rights are eroded, and how vital it is that self advocacy provides an antidote.